Rochester in the Summertime (Day +844)

We arrived back in Rochester this morning.  We were supposed to arrive last night, but mechanical difficulties delayed our departure until very early this morning.  The weather was great and we overflew Canadian airspace and the Great Lakes on the way over.  The new Mayo Clinic Plaza has been finished and they have a lot of street vendors selling and displaying everything from jewelry to homemade pies.  It lends a carnival atmosphere to downtown.  Summer  in Rochester certainly beats winter in Rochester!

This morning Jackie met with Dr. Zent.  He is very pleased with her progress.  I also learned a very important fact this morning.  Jackie does not have Scleroderma!  She has chronic graft-versus-host-disease (GvHD).  Of course we already knew this, so why the confusion?  It seems Scleroderma is the closest disease they can use to describe her situation.  They don't really have another name to describe GvHD/Scleroderma.  I'm thinking of coming up with with a fancy-sounding Latin name and giving Jackie a spot in history.  How about.....Jackiecilius Epidermatosis.  Maybe we can abbreviate it to JED ?  Latin scholars are probably having heart attacks as they read my new name :) Why is a separate name necessary?

A separate name is needed because there are some serious differences between Jakiecilius and Scleroderma.  Scleroderma is a disease that responds poorly to most treatments.  As it progresses it often invades heart, lung, esophageal, gastrointestinal,  and kidney tissues.  While, this is certainly possible with JED, it is far less likely.  It is also possible to reverse Jackie's disease by increasing her immunosuppression.  So, why don't they do that?  Because it is a balancing act.  The immunosuppression can also lead to problems.  The good news is that chronic GvHD tends to improve over the years.  The body learns to live with the new immune system and immunosuppression can be lessened.  The primary problem with JED is the potential for skin scarring.  Like Sclerodera, it can cause changes to the skin that are irreversible.  This is primarily limited to skin thickening and contractures which are limits on joint flexion and tension.  

Jackie also had completely normal blood tests.  Her hemoglobin was in the mid-12s.  Her platelets were 260 (remember when they were 2!).  Her lymphocytes were slightly elevated at 3.6 but remain stable from last September.  All-in-all the counts are completely unremarkable. 

The primary concern at this point is the skin cancer on her hand.  She is currently scheduled for surgery in early September.  Tomorrow we see the dermatologist.  Dr. Zent believes they may want to schedule surgery sooner.  The growth has been quite rapid.  We will know more tomorrow.  The surgery will be a Mohs surgery which is a highly precise surgery conducted using a microscope.  The surgery will likely last all day due to the fact they will excise small samples of tissue, stain, and examine under a microscope before making another incision.  They will also need to do some reconstructive surgery due to the size.  The actual lesion is approximately the size of a quarter and protrudes approximately .25" above the surface.  Skin cancers are a common problem after transplants due to the amount of immunosuppression.  

That's all for now.

Until later

Bruce and Jackie

From Rochester